Showing posts with label family. Show all posts
Showing posts with label family. Show all posts

Friday, 14 October 2016

An evening out with MS

This evening I'm going out.
And not just going out to a friend's house or a church meeting, but out out.

(Not quite this out out though:

Into London with the family to the see through sound concert raising money for RNIB.



This is a big deal.
A really big deal.
It involves a lot of different forms of transport
which all cause pain in different ways;
new places I don't know and so can't see in my mind;
decisions on the fly which are not easy with disability;
anxiety about how it will be
and excitement to be going.

We're staying overnight in London at a budget hotel which Rachel thinks this is an amazing treat.  But in reality it's because neither Mike or I think I'll have the energy to cope with getting home late in the evening. And besides, who doesn't love a cooked breakfast in the morning.
But even that will take a lot of energy.

http://mscalling.blogspot.co.uk/2015/11/spoon-theory-and-me.html

In all, this trip will take a couple of days worth of energy, possibly even a week's worth.  It's not like it used to be, or like it is for most people is it?  But it's possible to do and it's worth it.

To pull this off, the whole week around today has been planned to the smallest detail.  And here, with the help of cat photos, is what today and tonight will look....

Stay in bed lying down until 11am


Keep my feet up until 2pm when we leave


Stay as calm as possible, allowing Mike to take control of the travel


Lie down at hotel for as long as possible before concert


Enjoy the concert without embarrassing Rachel


Sleep as late as possible tomorrow morning


Come home, possibly after finding some Pokemon, 
depending on how I feel and how sight, pain and fatigue are doing

Hopefully that'll mean fun for us all and I won't end up in a crazy mess.  
Time will tell. 
Watch this space.

Cat photos taken by Inge Wallumrod and used under Creative Commons License.

Thursday, 6 October 2016

Message from Grandad #NationalPoetryDay #SayItWithAPoem #Messages



Ride a cock horse
To Banbury cross
To see a fine lady
Upon a white horse
With rings on her fingers
And bells on her toes
She shall have music 

Wherever she goes

This is the rhyme
I often do tell
Grandad would sing
Before he was unwell
Then the Alzheimer's
It took him away
He couldn't sing to us
When we went to stay


Next memory
He is sat in a chair
Not recognising
We were even there
But always we knew
Even then as a child
He loved us to visit
It was there in his smile


Thirty years on
He is still on my mind
Dad of my dad
He always was kind
Now when I hear
This is old nursery rhyme
Grandad brings a message
From back then in time